Wednesday, November 17, 2010

This spring I became an unwilling member of a club nobody wants to join: mothers who have lost a child. And as a "member" I hear about local women - I can think of two women in the past month, both moms of twins - who have lost babies born prematurely. And the one thing I keep thinking every time I hear about one of these sisters in grief is that enough is enough. One out of every eight babies is born prematurely (before 37 weeks gestation). That's 1,400 tiny lives per day; more than half a million babies born each year who are too early, too small and too sick. They have to fight battles and slay dragons the moment they're born, just to stay alive. It shouldn't be that way.

In honor of those babies, in memory of my son Graham and in honor of my son Will, I'm sharing my story here.

I went to work on May 18, 2010 just like on any other day. I was six months pregnant with twin boys (they were spontaneous) and had been seeing a maternal-fetal specialist because there was a growing discrepancy in the size of their amniotic sacs, plus Graham wasn't growing as quickly as he should. We never found out a reason for this; twin-to-twin transfusion was ruled out. There wasn't anything the doctors could do other than monitor them closely.

At my weekly specialist appointment at noon that day, I had an ultrasound as usual. I figured JB and I would go out to lunch afterward as we always did. Instead, when it was over, the specialist sat us down and told us that the blood flow to the brain of our larger baby (this was Will) was slowing down. He would be in trouble if he wasn't delivered soon. JB and I were speechless as the specialist told us we needed to go to the hospital right then and get prepared for delivery that afternoon. I was at 28 weeks and four days.

JB and I were naive. We'd always known the NICU was a possibility with twins, but we assumed we'd be there a few weeks at most, easy-peasy, and the boys would go home. Anything worse was just the kind of thing that happened to other people.

I had nothing but the clothes on my back and my purse when we checked in at the hospital. Our families rushed up there, and luckily they brought cameras!

Will and Graham were born two minutes apart late that afternoon by emergency C-section. I got to kiss each one before they were whisked away to the NICU - they were tiny and beautiful. Will weighed 2 lbs 15 oz, and Graham weighed 2 lbs 7 oz.

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Mr. Will and his nurse, the day after he was born

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Both boys were on ventilators from the start, and Graham immediately began having major problems, mainly with his lungs. He and Will both fought so hard; I'm proud of their strength, their bravery and their fighting spirit. The NICU at the hospital in my town is top-notch, the only Level 3 NICU in the region. We had many good doctors and amazing nurses.

One of the doctors - JB and I called him Dr. Doom - told us the following day that Graham's outlook wasn't good. It was the worst conversation I've ever experienced, like someone was clawing my heart and punching me in the stomach at the same time.

I'll save you the extensive medical jargon and the scary days that followed. Basically, Graham's lungs were too weak to supply him with adequate oxygen - they'd already collapsed once - which meant his other organs...I'm going to stop writing about this part.

What I'd rather tell you about is his sweet face, that the top of his head was the softest thing I'd ever felt, that he opened his eyes a few times, that his oxygen levels went up when I was allowed to hold him, and that I got to hold him as he passed, while surrounded by all of our family who loved him. He lived and fought for six incredible days.

In the incubator a few feet away, Will was fighting his own battles. He, too, had trouble breathing and was on oxygen for weeks. He had a heart murmur that sounded, according to the pediatric cardiologist, like a washing machine. He had a Level 4 brain hemmorhage (the highest possible on a scale of 1 to 4) on the right side of his brain which had occurred sometime in utero and that we were told could cause anything from mild ADHD to severe developmental delays. His eyes had fragile vessels that had to be checked every few days to make sure they hadn't burst. To top it all off, about two weeks after he was born he contracted a staph infection - a serious problem for a preemie. Because of all the needle sticks he required (thanks to increased medication to fight the staph) the nurses began running out of places to stick him and he underwent surgery to insert a PICC line in his chest that remained for the duration of his NICU stay.

I say all of this not to complain or to list grievances, but to illustrate the long, hard road faced by preemies. We met and befriended parents whose babies faced every conceivable hurdle, from perforated bowels to brain swelling.

Will spent 71 days in the NICU before he was allowed to come home. Since then, he's had visits with the cardiologist, neurologist, orthopedic pediatrician, optometrist and pulmonologist, in addition to his regular pediatrician. Through it all, he's been strong-willed and tenacious. He's passed all of his appointments so far with flying colors. He's been developing normally for his adjusted age.
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Will in October, age 5 months

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For a long time I didn't have the emotional stamina to get involved - or even to want to get involved - in advocacy. But enough is enough. Truly. Parents shouldn't have to go through what we went through, and no babies should have to go through what mine did.

November is Prematurity Awareness Month and today is Prematurity Awareness Day. You can find more information here. The statistics are here.

I know the holidays are a time of giving for many families. If you are looking for an organization to donate to this year, I urge you to consider the March of Dimes or your local NICU. All babies deserve to be born healthy, and they all deserve their full nine months.

Added February 2011: If you'd like to join and/or donate to our March of Dimes team, you can visit Team Will + Graham﻿.

14 comments:

I can't imagine what you and Jeff have gone through, AC. I know baby G holds an irreplaceable spot in your hearts and you must miss him terribly. Mr. W is so lucky to have such a wonderful mommy like you and his story is awesome, especially that he's doing so well. He is a handsome little man and I can't wait to see more pictures of him as he grows!!

I think you are wonderful. Having a baby makes a woman an advocate whether she wants to be or not. Moms are often times the only advocate a child has, and you are in a position to use your painful experience to better the outcome for so many others. You are definitely wonderful.

Bless you for posting this. I remember how heartbroken I was for you when you first lost your boy. Just a few months ago, I re-read posts to get a sense of how you're doing. I can't imagine your simultaneous heartache and joy.

My older son had a staph infection 10 days after he was born. He was full-term and perfectly healthy otherwise, and yet he ended up back in the hospital for a week. I can't imagine what your anxiety must have been like.

I had a miscarriage between my two boys, and a few years ago, I was asked to speak before doctors and nurses on a panel of three mothers who had lost children. One mother had had a stillborn child. The other lost her son at 6 weeks. It was a painful, beautiful afternoon. I have such respect for those women (I remember the woman whose six week old died. She buys herself roses on his birthday each year, almost 30 years later). I was so happy to see those in the medical profession wanting to reach out to patients with their hearts as well as their skills. It was a day I'll never forget.

I've had four miscarriages- one at eighteen weeks- and it's always seemed to me like there was this wall of silence. It's a subject that seems almost taboo.People would say things sometimes, like "your babies are probably better off", and that always made me feel worse, because not only was I was grieving, but it was almost like I had to justify my feelings to everyone else.It's a lonely road to be on.By sharing your story you make that road less lonely.

randine, I'm so sorry for your miscarriages. I think in some ways losing a child is harder for women who have miscarried because there's this idea that you're not supposed to talk about it, or that because the baby was never technically born that your grief isn't justified. A loss is a loss, whether your baby is 8 weeks along or 88 years old.

I also think that some people (though obviously not anybody commenting here because you all are amazing) just don't know what to say to someone who has experienced loss...heck, I was (and maybe still am) one of those people. It's hard to find the words. After we lost G, a lot of people would say things to us like, "well at least you still have one child" as though that somehow made the loss of G better, or that because he was a twin he wouldn't be missed as much. All of our loved ones have special places in our lives that can't be filled by anyone else, and that's OK.

You break my heart. I'm crying. I don't know if I could be as strong as you. We expected the worse with my last pregnancy. The measurements were wrong, fetal movement was wrong, it was another high risk pregnancy all but living in the doctor's office.

Everything turned out all right, and it's a miracle. I watched my friend go through the same thing, and her daughter never came home from the hospital. She was stillborn.

*hugs*

If there was something I could do to take your pain away, I would. The only thing I can offer is the firm belief that families are eternal. You'll have your son again.

*more hugs*

As soon as I stop crying I'm going to go hold my kids for awhile.

Enjoy W. They grow up so fast. A few months of cute giggles, then they learn to move and your world ends. My 15-month old is fascinated with doors. Taking him to store is like begging for a heart attack. He likes to run out the automatic doors towards the parking lot.

Thank you for sharing your story. Life is so fragile, "love" so inadequate a word. I would love to see a post about what you found comforting during those toughest days -- to help those of us who want to help those we care about in similar situations but don't know how.

Oh wow, Anna, thank you for sharing. You have all these fantasies of a happy healthy child when you get pregnant...I can't imagine what it's like for things not to turn out how you imagine. You are very tough for writing about this, and Mr W is so lucky to have you as his mother. Preemies are a big deal in my family- I was born 11 weeks early and weight 2 lbs 11 oz. So I always have a special place in my heart for preemies. Plus my husband is a twin :) Thanks for raising awareness, and your little boy is so precious! I'm so glad you got to kiss and touch Mr G.